Stigma is one of the biggest problems currently facing those battling against dementia. Fear of the big D easily rivals fear of the big C, but whilst cancer campaigners have made massive strides in helping society face up to that terrifying disease, thus greatly improving diagnosis and outcomes for those living with it, dementia is still hugely misunderstood.
People with dementia are often isolated and treated with inferiority, consigned by many to no longer being seen as valuable members of society. Yet I have frequently thought, particularly recently as we continue to mourn dad’s passing, just how much dementia simplifies life. This crazy whirl that most of us live in for the majority of our lives is stripped back to the most basic needs and wants when someone is struck by dementia, particularly when they enter the more advanced stages of the disease.
In many ways, therefore, society has much it can learn from those living with dementia, not just about the disease, its diagnosis, treatments and ultimately how it might be prevented or even, hopefully, one day cured, but in the lessons dementia teaches us about what is important in life.
Dementia also brings alive in those who care for a loved one battling it the most overwhelming compassion, love, dedication and humanity; qualities that so many people often overlook in everyday life.
Yet dementia is still a largely hidden disease. Recent government initiatives, and work by organisations such as the Joseph Rowntree Foundation to create dementia friendly communities, are attempting to break down barriers, but it is still people living with dementia, their nearest and dearest, and those charged with guiding them through this minefield that have the most to offer in helping the wider population to acknowledge, confront and defeat this disease.
Over the years I’ve encountered many within my peer group who have no concept of dementia, to the point where some have thought you can catch it, or even that I must have it having spent so long caring for my father! People would avoid visiting dad rather than sit and comfort the man he had become, and sadly there are so many people living out their days in care homes who have ‘no’ family, or at least no one who can face the reality of a relative with dementia.
The notion of feeding, washing and changing an adult like you would a child is something that large parts of society find too horrific to contemplate. That someone could have no concept of where they are, who they are, or who anyone around them is, will equally see most observers recoil in horror. I don’t believe, however, that people living with dementia or their families want sympathy, we didn’t. What we have always wanted is an understanding, an acceptance and a will within society to confront this disease and defeat it.
Dementia is stigmatised, but that doesn’t mean it’s not affecting people from all walks of life every minute of every day. The “Out of sight, out of mind” attitude really won’t work with dementia. The people living with it are real individuals, all with their own unique life story, and the real disgrace is to pretend otherwise.
Until next time…